True confession: I often go back and forth about what I share with you here. Multiple Sclerosis is the platform on which the blog began, and so I feel an obligation, a necessity, to share with you about my health. I believe in 2 Corinthians 1:4 that I might use my trial as an opportunity to comfort others in their trial. But I also confess I am at times ashamed to post about my health. I feel like I’m complaining (which I confess I really do at times!), or that I should only be sharing the good and not the bad, or my most prevalent concern: my trial with MS pales in comparison to others’ trials and so perhaps I simply shouldn’t write at all.
However, I am reminded this week that God has offered this platform for me to write and I cannot know His plans for it. As the name of the blog suggests, I am called to write—especially about my battle with MS--it is an act of obedience.
I didn’t post much this past week because of my health and because I have been struggling with what to share. However, I recently read a brief devotional in my Our Daily Bread pamphlet that helped me better understand how and what to share about this past week:
In All Circumstances
In our suburb we complain about the constant power outages. They can hit three times in a week and last up to twenty four hours, plunging the neighborhood into darkness. The inconvenience is hard to bear when we cannot use basic household appliances.
Our Christian neighbor often asks, “Is this also something to thank God for?” She is referring to 1 Thessalonians 5:18: “Give thanks in all circumstances, for this is God’s will for you in Christ Jesus.” We always say, “Yes, of course, we thank God in all things.” But the half-hearted manner in which we say it is contradicted by our grumbling every time the power goes off.
One day, however, our belief in thanking God in all circumstances took on a new meaning. I returned from work to find our neighbor visibly shaken as she cried, “Thank Jesus the power was off. My house would have burned down, and my family would have perished!”
A refuse-collection truck had hit the electricity pole in front of her house and brought down the high-tension cables right over several houses. Had there been power in the cables, fatalities would have been likely.
The difficult circumstances we face can make it hard to say, “Thanks, Lord.” We can be thankful to our God who sees in every situation an opportunity for us to trust Him—whether or not we see His purpose.
MS is my daily trial. It’s my reality, and I dare not compare it with anyone else’s daily struggles. However, I can share with you my walk through this valley—the real and the ugly parts of my inner (and outward) fallen humanity. But as this article suggests, I can also share with you the ways I can give thanks in my circumstances. The ways I can choose to see God using my MS for His Glory. So at the bottom of this post, I will reflect on this past week and the ways I can choose to thank God in all circumstances.
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This week has been an eventful one at the Allerding household. I had a rather impromptu doctor’s appointment with the neurologist last Monday. Two weeks ago, when I was in for my infusion, I lamented of the ongoing fatigue that has attacked me for so long now. “I’m so tired” can’t possibly explain the way I feel. It’s a tired that doesn’t go away with good sleep. It’s like carrying around a dumbbell all day or getting superglue on your skin—it’s heavy—impossible to peel away at times. It’s life-altering.
I read an article recently that suggests “Upwards of 80% of people with MS experience unusual fatigue, with over half ranking it one of their most troubling symptoms, according to the Society’s MS Information Sourcebook. It’s complex, with many possible contributing factors, and it’s invisible, which makes for huge human problems…” (Tackling Fatigue by Heather Boerner and Bridget Murray Law).
As I sat and talked with the nurse and some of the other patients, they lamented of similar symptoms and urged me to schedule an appointment: “There are medications that could help you with energy,” they encouraged me. “Just talk to them.”
So I did.
It was an encouraging appointment overall—one that at minimum helped me better understand Multiple Sclerosis. She encouraged me with the reminder that I am on THE BEST drug there is for MS. The Tysabri is a disease-modifying drug, which means it is meant to keep new lesions from forming in my brain. One of my biggest questions has been whether or not “pushing through” all this fatigue is ultimately going to harm me down the road. What she said was incredibly helpful and encouraging: “As long as no new lesions are forming in your brain, pushing through will not hurt you any more than it will the normal person walking down the street.”
The key is whether or not I have any new lesions. They feel confident the Tysabri is working, but we will do a repeat MRI in a few months to confirm--no new lesions would be the best news I’ve had in two years, and it would mean my MS is being held at bay.
What she also explained, however, is that while the Tysabri infusion is hopefully holding the MS from progressing it is not going to cover any of the symptoms I already have: my hands, legs, fatigue…. With the fatigue being such an ongoing battle we decided to try a “wakefulness-promoting agent” typically used for treating narcolepsy. A pill. A little less than one week in, I can report that this past week has been a very real struggle amidst the larger battle against MS. The supposed solution has created more bad than good.
While I felt at times I had more energy, I now could not sleep at night. I was not only being attacked by fatigue from my MS but also by insomnia, leaving me up most mornings from 2am on. While I didn’t realize it at the time, due to the new medication I began to feel tightness in my chest, nervousness, anxiety, mood swings, shortness of breath, dry mouth. Three nights ago, during my “wakefulness,” I realized my feet and legs were numb and tingling (also a potential side effect I wasn’t aware of). This was something I hadn’t felt in two years, since the initial attacks when I was first diagnosed.
As a result of all of this—no sleep, the anxiety from the medication, the fear of the numbness in my feet and legs—I had a panic attack in the middle of the night, something I’ve never experienced before—Would I be able to walk? What was happening to me? God, how could you let this happen?? All of this from a pill I’ve only been taking for a week.
Needless to say, I called Monday and told them I was going off the drug. I already feel more like myself again.
I wanted it to be easy: Here’s the pill. Here’s more energy. Problem solved. But clearly that is not the road I am on. We will eventually try something else for energy but for now, we will take a break.
I appreciate your prayers, dear reader, as we try to navigate these new roads—not just for myself but for the incredible husband, family, and close friends who help me through and watch the struggle most closely. I pray for that repeat MRI—that there will be no new lesions.
I confess I do not like this battle.
I can also tell you I believe there is a God in heaven who has entrusted it to me. And as I mentioned at the beginning of this post, His Word tells me to “give thanks in all circumstances….” Here are some of the ways I can be thankful over the past week:
· I know He is drawing me closer to Him. In my “wakefulness” both in the day and in the night, I used that time either to pray or repeat Scripture in my mind. I am thankful for the opportunity to pray for the precious people on my heart those nights. I may never know but that He kept me awake those nights to be praying for something or someone specific.… .
· I give thanks for the Oak Clinic—for a place only a few minutes up the road that specializes in Multiple Sclerosis!
· I give thanks for the developments in MS treatments—that I am able to be on a disease-modifying drug like Tysabri.
· I give thanks for the bold reminder this past week that I am not in control. That my flesh is weak. That God is the “blessed controller of all things.” (1 Timothy 6:15)
· I give thanks for the opportunity to rely on Him and Him alone.
Ultimately, I give thanks that this ongoing fatigue—the wakefulness, the sleepless nights have my mind focused on rest. Please, God, I beg. Help me find rest.
Of this Truth I am convinced: I will find my rest in Him.
Yes, my soul, find rest in God; my hope comes from him.
Psalm 62:5